In addition you should make sure that most, if not all, of the following points are brought out during the discussion.
- Huntington's Disease is a devastating, hereditary, degenerative brain disorder that slowly diminishes a persons ability to walk, talk, think and reason.
- HD is caused by a defective gene, and every person who has the gene has a 50/50 chance of passing the gene along to their children.
- HD affects both genders and all ethnic groups equally.
- Presently, there are no effective treatments and no cure for Huntington's Disease.
- Individuals with the defective huntingtin gene usually develop symptoms of Huntington's Disease between the ages of 30-50. Until then they live full, normal, healthy lives.
- Fear of genetic discrimination dissuades many at-risk individuals from entering into clinical trials, or undergoing genetic testing which hinders progress towards treatments and a cure.
- HIPPA and the ADA leave gaps in privacy protections for individuals who are affected with conditions that have a genetic cause.
- The Genetic Information Nondiscrimination Act (GINA) would ensjre that no person would face discrimination in employment or insurance based on genetic history.
- GINA is necessary for those living at-risk for disease like HD to feel protected if and when they decide to be tested or enter into a clinical trial.
- A positive gene test may result in a person being unable to acquire health insurance years before any symptoms of HD are manifest and as a result going on a health care program funded by public taxes when they could be under an employer funded health care program.